Heartbreak and Hope

LET'S. CURE. DYSTONIA.

I went to Capitol Hill to fight for a cure for my movement disorder, Dystonia. My family and I went to Dystonia Awareness Days with the Dystonia Medical Research Foundation and we went to 8 senator offices. We only met one senator; we told our stories to staffers but people who had done this before assured us it was normal. I felt empowered and absolutely on fire to fight for a cure.

I met Chelsie who had  Dystonia in her neck. She did not get diagnosed for 12 years. I can't imagine that absolute frustration! I got diagnosed right away because I live near Chicago and my neurologist, Dr. Geotz prescribed a medication that has worked for 17 years. The fact that people have to wait years upon years for a diagnosis angers me! After that, they have to figure out treatments which can also take years. Chelsie is still waiting for the right treatment.

My Sister and Me

Jasmine, Chelsie, and I

Melissa has two precious little girls who have this ugly condition. As a mom, she is fighting for her girls! Melissa takes her beautiful girls to acupuncture just hoping it helps. There is no guarantee. I'm not a mother but I couldn't imagine the pain that comes with seeing your kid suffer. Ugh. HOWEVER, Melissa is a beauty queen and works her magic with her crown and sash with the senators. She works that angle well! YOU GO GIRL!!!

There was such a sense of hope and community during those two days. Everyone was so determined to tell their stories and tell their congressman why Dystonia should be on the National Health Institute list of rare diseases. If Dysttonia gets on the list, we get funding for the Fiscal Year 2017. Chelsie and her loyal friend, Jasmine did so well telling their stories and Genevieve, my little sister was great. I'm so glad Genevieve has a heart for public service. Of course, my parents were awesome too!

Before the trip, we had scheduled a consultation for Botox injections in my throat. This trip got my hopes up in a big way because everyone had some kind of success with it. Two weeks after, Mom and I go for the appointment thinking about all the possibilities. I definitely want to talk! This could be amazing!

It was not amazing. If I had a specific group of tight muscles, Botox would work but I don't. The Dystonia is all over my body and I can't talk because the message between my brain and mouth get so interrupted that I'm not a candidate for Botox. After the doctor left, I started sobbing and Mom was crying. My heart felt like it resembled a windshield after a terrible car accident. My heart was broken. I wanted it so badly. I'm crying as I write this. I was ready to have an easier time talking. It is not coming anytime soon.

This is why Dystonia needs to be cured! It needs to be cured for Chelsie who wants to put her paycheck towards furthering her education not medical bills. It needs to be cured for two little girls who should be outside playing not poked with needles.

To end on a good note, my body feels ready for the Easter Seals race on Sunday. I'm ready to tackle that extra quarter! Just a last call to donate: http://www.firstgiving.com/fundraiser/HannahThompsonES/RunFortheKids2016

After the conference, I cannot help to have a fierce amount of hope for a cure. Our passion for a cure is like wildfire. We are fearless!

I'll keep fighting Dystonia. Your job is to keep reading!

Hannah! 

Thoughts About Dystonia

Hey Readers, 
This post is going to be short because I have been working on my website which requires a lot of typing. 

I did win the award from the Dystonia Medical Research Foundation. It's for young advocacy. I get the privilege of going to Washington D.C. and receiving the award. I am so excited! Mom, Dad, Genevieve, and I are all going next month.

It's interested because I feel like very close to a cure for Dystonia. My feelings about Cerebral Palsy and Dystonia are extremely different. I get frustrated with Cerebral Palsy because I don't think a cure for C.P. will happen in my lifetime. It's frustrating because I want a cure! I don’t want to go to therapy all my life. However, I know therapy is a lifelong reality. I can motivate myself by doing walks like the Easter Seals Fun Run but that doesn't equate to driving myself to the grocery store. Big difference!  

On the flip side, curing Dystonia is a reality. I have a strong desire to contribute to the cure. People like Michael J. Foxx are my inspirations for advocacy efforts. Mr. Foxx did not disappear when his Tourette Syndrome flared up. He faced it head on. I would love to meet that guy because we are both on the same page. 

From a medical standpoint, I could be in a trial experiment. I really wouldn't hesitate. The person who would hesitate is my neurologist. He would not experiment with my quality of life. I can't blame the guy. My parents are right in the middle of our viewpoints. They are always curious about the research being done but nobody wants to experiment with the quality of life I have right now. 

I'm really excited about getting the award and I hope to God that I get a job. I'm going crazy without a job. I'm staying busy but I wake up without a sense of purpose and that's difficult. I think working for any organization that needs a voice would be amazing!

I'm going to the new condo this weekend with my parents to visualize the changes we're making. The three of us have been e-mailing every day with ideas. My parents are kitchen designers so we have tons of decisions to make. Mom and I are constantly sending each other decorating ideas on Pinterest. It's so much fun!

I mentioned it earlier but the Easter Seals walk is coming up and if you would like to donate, please go to: http://www.firstgiving.com/fundraiser/HannahThompsonES/RunFortheKids2016. If you did donate, THANK YOU!

I'll tell you about D.C. next month and if I get a job (or you know of something), I will be the happiest woman on earth! 

Love,
Hannah!

Moments of Independence

There are moments that define your life. College graduation, having a baby, getting married, or buying your first house are some of those moments. This post isn't about a moment that changed my life; they are about little moments that affirm my choice to live independently. 

First, I got a haircut independently.  After my last haircut, my hairdresser asked me, "why do you still have your assistants come...we're good on our own"? I thought about it. Why do my assistants come? Hmmm...there was no good reason. So this time, I went in the salon and my hairdresser told me how to angle my chair to get my hair washed. I tilt my chair and lower the back a little bit and she can wash my hair. When it's time to cut my hair, my hairdresser moves the normal chair and I roll in. It's pretty typical from there. I go to Salon Efthimia for everything so I knew the receptionist very well and she helped me pay and tip my hairdresser. It's pretty exhilarating to know that I can do that independently! 

The other independent moment was with my doctor. I just needed a refill so I knew it was an easy appointment. The nurse comes in and for a moment, she looks terrified that I didn't bring my assistant in but after a minute of conversation and explaining what I needed, she totally relaxed. When my doctor came in, she said, "I see you're alone today" and she smiled. We talked about the FCC and she was very proud. She joined the hunt to find me a paying job. She did give me a self breast exam; I think doctors will make the extra effort to get involved if you are alone. If you are a person with a disability on the fence about going to the doctor independently, I would give it a shot and have your caregiver in the waiting room. See what happens! 

Most of you know from Facebook, I went to D.C. It was great like always! I already want to serve a second term starting in 2017. The FCC would have to want to continue our Committee so one step at a time. A big thank you to Stacia who made the trip with me!

These moments of independence are so exciting but I actually have more exciting news. After a year and a half of looking, we found a condo in Elmhurst that I love! We closed on it yesterday and it's a true blessing! The woman who owns it now goes to one of the churches I go to in Elmhurst so it feels great to do business with someone who shares your faith. I'm excited and I want to really thank my parents. I am so fortunate! 

Remember when I wrote about meeting Bob Dold? The woman from the Dystonia Medical Research Foundation who joined us suggested I apply for a young advocacy award. I'm working on the application so prayers and good vibes are welcome! Regardless of whether I receive that award, Mom, Dad, Genevieve and I are going to Dystonia Awareness Days in April. This happens to be in Washington D.C. too!

Finally, and this is really amazing and has also has taken some time too but I finally have a website! I know, right? Go to http://inhannahswords.org/ to see it! We're far from done but I feel like I can show it off. A huge and sincere thank you to Kevin for working so hard on my website. Kevin helped me get confirmed in the Catholic Church back in college and now, he is designing my website! It's amazing how God works. Kevin currently works for the Give Something Back Foundation which I am a mentor for. 

I'm starting to see a light at the end of a very long and painful tunnel. I'm getting glimpses of that light and I can't wait to see how bright it is! 

Letting the Light In,

Hannah! 

Me and My Parents

Over the years of living independently, I've had the same questions about my parents and me. I quickly learned we don't fit the mold and that's OK with me. People seem to be mystified and I thought this was a good time to demystify. Here we go! 

Popular Question #1:  Do you go home on weekends? 

No. I don't go home on weekends. I go to church, go shopping, and get together with friends on the weekends. Unless it's a special occasion, I'm not going home. 

Popular Question #2: Why don't you go home more? 

I love and appreciate my family more than words could ever describe, don't ever think differently! However, when I go home, I have to go to bed because my parents want to go to bed, I have to eat because my parents are eating, and I have to exercise more. I think you get my point. The dynamics instantly change Nobody wants to go to bed when their parents do at age 25. My parents will try so hard to stay up for me and I appreciate it, but they get tired. It's fine, but if we did it every weekend, we would be crabby. After living independently for 8 years (yes, 8 years), I've certainly developed a very particular, methodical routine for bed time that they just aren't used to. Appropriately, I get teased so much for having such a detailed routine. For example, my assistants are all around my age and understand why I want facial cleanser and all that girly stuff at night but this goes over my father's head. Granted, he is very cool when we're in DC and I need my makeup put on. Finally, I stay busy and don't really have time to go home. Also, my parents are busy too!

Popular Question #3: What do your parents do? 

They are kitchen designers who own two stores in Glenview and Wilmette. Yes, this is a shameless plug! I'm extremely proud of my parents, it hasn't been easy all the time. They have beautiful stores and we seriously have the best employees. The stores have made our life so much easier because they have incredibly flexible schedules and I have an appreciation for that. David is 20 and my little brother who attends the University of Kentucky. He launched a website and business this year. Genevieve is 16 and incredible! She participated in a summer program called Hands of Peace where they bring teenagers from the Middle East to the United States and they have dialogue about their beliefs. Genevieve was forever changed by the program and she wants to go into political science. She blows my mind! They all really blow my mind! 

Popular Question #4: Do David and Genevieve help you? 
My parents and I have left that up to them but I would definitely say yes. Genevieve has no problem getting me dressed now and David will definitely help me with stairs or anything physical. 

The most important aspect of our family is that we love each other unconditionally. You will never meet a family more loving or caring. We will tease each other mercilessly! I get teased for being so lovey dovey. David and Genevieve tease me about how much I get called an inspiration. It keeps me down to earth. They will always be there to remind me I'm just living my life.  No big deal (which is the truth)! 

I think my parents are good at keeping my morals and values in check. It's funny because I will call them when I know I could be doing something stupid and most of the time they will say you know better. Those calls are few and far between but I called them this month and they steered me in the right direction. By the way, Mom and Dad, I'm so grateful for your direction. 

A former babysitter once asked my parents what went so right? Personally, I think it's that we grew up knowing we could go to them with anything and they would help. The second thing that they did right (in my eyes) is that we never were discouraged to explore our identities. For example, they really encouraged me during my confirmation in college but they also discouraged me from putting the pressure on David and Genevieve to become religious. 

I wholeheartedly thank my parents for letting us be who we all choose to be. We're extremely different which I don't think people realize, but when it comes to morals and values, we're the same because we have incredible examples!

Proud to be a Thompson, 
Hannah! 

This post is in memory of Janet Cederquist. One of the most family oriented women we will ever know. We love you, Mrs. C!

 

A Simple Message

We've made Christmas such a big deal and in some ways, we're right on track. Our Savior came down and gave us hope. It's a huge thing that deserves a lot of attention. If you celebrate Hanukkah, it's about a miracle and that deserves attention also. 

These two miracles that we celebrate have turned into stress for so many. For example, I love sending Christmas cards! I love staying in touch and seeing your pictures. Honestly, it's become a staple for having my own apartment and being independent for another full year. However, I eventually get stressed because it becomes about how many can I get out this year? That is when I have to say to myself, 2,000 years ago a baby was born and they rejoiced over a little baby boy. They didn't go out and stress themselves out over gifts, decorations, and cards.  They just enjoyed the moment. 

Christmas day is over but I hope the peace and joy of that day stays with you. We are going to Mexico as a family and I am going to really try to be in the moment with my family. If I forget to check my phone, the world will go on. Granted, I just got a smart phone for the first time in August so it's still a new, shiny toy to me so forgive me if I am weak.

Well, the meeting with Congressman Dold went very well. He already was a fan of giving funds to Dystonia so meeting me was just another reason for him to support research. Most importantly (to me), he knows I can and will speak to any audience! If he asks me to speak, it'll be in this blog, I promise! Janet, a woman from Dystonia Medical Research Foundation was there to provide facts about Dystonia. She was amazing and we will definitely be partners for finding a cure! She invited me to the Awareness Days in Washington, D.C. in April and I can't wait to go!

2015 was the worst year of my life so far. Losing Julie and my job took a toll on me in countless ways. I feel like God is preparing me for something big in 2016 and I pray and hope that I am right! 

See you in 2016,
Hannah!